NEALE Daniher always knew he would probably never benefit from the campaign he has spearheaded to fight the deadly motor neurone disease that is slowly stealing his life.
Neale’s campaign, which the Sunday Herald Sun so proudly supports, was always about helping others, about raising money to fast-track a cure for the generations ahead who will be afflicted with this awful disease.
It was, and is, one of the most selfless, inspiring acts this state has ever seen.
And in so many ways, Neale’s Fight MND campaign has brought out the very best in Victorians who have given so deeply to the cause over the past 2½ years.
Through events such as The Big Freeze at the ’G, an astonishing $15 million has been raised and, with it, the hopes and hearts of those afflicted by MND and those who love someone with MND — have also been raised. And today, a week out from Big Freeze 3, hearts will again soar as we talk to Neale about his battles with MND.
Again, he shows us the power of the human spirit.
Still able to walk, Neale says his lung capacity is now only at 75-80 per cent of what it was and he can no longer jog.
Simple tasks like dressing are become increasingly difficult as his body succumbs.
Although frustrated and impatient at the slow loss of his independence, the 56-year-old remains overwhelmingly positive, grateful that he was able to walk his two daughters, Lauren and Bec, down the aisle at their weddings in the past year, and still keen to share his journey, not to garner sympathy but to gather support for the cause.
“I’m lucky in a lot of ways — my disease has progressed slower than it could have, and I haven’t been hit with it as young as many people are. They often still have little children, but mine have grown up,” Neale said.
His amazing kindness in using his precious time to raise awareness and money for the MND fight is an inspiration that cannot be overstated.
At a time when most would turn their energies and focus to loved ones, Neale began a campaign to bring this “forgotten bastard” of a disease into the spotlight.
When Neale first put his face to the disease in 2015, the National Health Medical Research Council gave MND research just $2 million out of its $420 million pool — multiple sclerosis research received 10 times that. MND researchers believed a cure could be found within a few short years but were fighting an uphill battle to secure funding.
A cure may still not come quickly enough to save Neale but through his tireless efforts there has already been great progress and greater hope for a cure in the days ahead.
Just last month, Florey Institute researchers announced a $5 million project that will speed up drug tests on human motor neuron cells 160-fold by employing the same technique that has been used to find treatments for forms of cancer, diabetes and HIV.
The project to identify and trial drugs that may be used to defeat MND was funded with $3 million from the state government and $2 million from the Cure for MND Foundation.
As Premier Daniel Andrews said at the time: “We wouldn’t even have known to fund this research if it wasn’t for the leadership Neale and his team have shown.”
Fight MND also announced donations of more than $8 million to nine other Australian-based research projects into MND, which has no known cure or treatment, and which in 2015 accounted for one in every 211 deaths in Australia.
And with 2000 Australians currently living with MND and two to three more diagnosed with MND every day, the search for a cure remains urgent.
Neale was a much-loved footballer who earned great respect on the field for Essendon before knee injuries ended his playing career.
He would, of course, become the last coach to take Melbourne to an AFL Grand Final.
But it is for his off-field courage that Neale may well be most remembered.
And as he prepares to once again walk with hundreds of his “freeze army” from Federation Square to the MCG for the celebrity Big Freeze at June 12’s Melbourne v Collingwood AFL match, the Sunday Herald Sun asks that all Victorians come together to salute this man, and donate to support the fight against MND.
And to Neale, on behalf of our state, we thank you for your fight and your courage.
You are, simply, our inspiration.
Find out more about the Cure for MND Foundation here: fightmnd.org.au
Story Source: Herald Sun